{"id":"W4393116621","doi":"10.1080/21678421.2024.2328599","title":"Patient engagement in research: lessons learned from CAPTURE ALS, a longitudinal observational ALS study","year":2024,"lang":"en","type":"article","venue":"Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration","topic":"Mental Health and Patient Involvement","field":"Health Professions","cited_by":4,"is_retracted":false,"has_abstract":true,"ca_institutions":"ALS Society of Canada; McGill University; Montreal Neurological Institute and Hospital; Université de Montréal; University of Alberta","funders":"","keywords":"Focus group; Observational study; Community engagement; Empowerment; Public engagement; Government (linguistics); Documentation; Psychology; Public participation; Medical education; Political science; Public relations; Medicine; Sociology","routes":{"ca_aff":true,"ca_fund":false,"ca_venue":false,"about_ca":true,"invisible_to_affiliation_only":false},"retraction":null,"screen":null,"direct_labels":[],"prediction":{"model_version":"metacan-v3-hybrid-931329e0061c","candidate_categories":["metaresearch"],"consensus_categories":["metaresearch"],"category_scores_codex":[0.2530621,0.0009293965,0.001823158,0.002463628,0.003732802,0.008144619,0.004714649,0.003546473,0.001931288],"category_scores_gemma":[0.3207531,0.001148005,0.001801357,0.003136195,0.00730414,0.01130453,0.008030274,0.007059586,0.000692253],"about_ca_system_candidate":false,"about_ca_system_consensus":false,"about_ca_system_score_codex":0.006367971,"about_ca_system_score_gemma":0.02356755,"about_ca_topic_candidate":false,"about_ca_topic_consensus":false,"about_ca_topic_score_codex":0.01757621,"about_ca_topic_score_gemma":0.05707438,"domain_scores_codex":[0.7763423,0.1977401,0.009395059,0.003956888,0.009381351,0.003184366],"domain_scores_gemma":[0.5966834,0.3169719,0.01137228,0.03011777,0.03385939,0.0109952],"domain_codex":null,"domain_gemma":"methods","domain_candidate":"methods","domain_consensus":null,"study_design_codex":"design_other","study_design_gemma":"observational","study_design_scores_codex":[0.001026364,0.001671359,0.1425654,0.00886814,0.0006915257,0.004214184,0.3673357,0.00100766,0.0008554257,0.01387133,0.05335471,0.4045382],"study_design_scores_gemma":[0.000989027,0.005167905,0.1109627,0.057496,0.001271912,0.005782758,0.4119876,0.003986669,0.002231692,0.07445915,0.3247306,0.0009339291],"study_design_candidate":"observational","study_design_consensus":null,"genre_codex":"empirical","genre_gemma":"empirical","genre_scores_codex":[0.4207702,0.1042385,0.08848774,0.3510411,0.006142961,0.00688932,0.002755486,0.0006455778,0.01902906],"genre_scores_gemma":[0.7300909,0.05346233,0.1556167,0.04345518,0.004069302,0.008984471,0.001432598,0.0004902098,0.002398291],"genre_candidate":"empirical","genre_consensus":"empirical","teacher_disagreement_score":0.7469379,"threshold_uncertainty_score":0.9211074,"prediction_status":"machine_predicted_unvalidated"},"machine_scores":{"provisional":true,"baseline":true,"maturity_gate_passed":false,"score_opus":0.7845738641978866,"score_gpt":0.5022835044856921,"score_spread":0.2822903597121944,"validation_status":"score_only:v0-immature-baseline","note":"Baseline scores from an immature model (maturity gate not passed). Scores rank; they never assert a category."}}